deplorable.

I’ve been afraid to write lately.

Being a “writer” has always been hard for me because there’s not a clearcut definition for it. By profession, I am a writer, but I was a writer long before I got paid to do it (which is still a miracle in my eyes.) Writing is the means by which I can express myself fully and wholeheartedly, and I would do it whether the world saw any of it or not. However, some time last year I decided I was going to tell my story publicly, without censorship, and be more true to myself because I think I have an important, or at least interesting story to share. It wasn’t a decision I made lightly, but it was one I committed to fully.

It was an inspiring idea. A thoughtful, purposeful idea. A brave idea, even. One that kind of all goes out the window when you get real, unapologetic, insulting criticism from a voice that matters and proves that at the end of the day you’re not as unflappable as you’d like to be.

Even though I’d set out to write honestly, I didn’t post very often, but when I did my articles generally received positive feedback.

A few months ago I wrote a seemingly harmless post about dating with a disability, and how accepting my partner is. It was somewhat sarcastic, but mostly vulnerable and shined a light on relationships that aren’t really seen in the public eye. It was shared by the disability community widely, and overall I received positive remarks and well wishes in my journey.

Until one night when I received a phone call.

It was my aunt. For a large part of my life, my aunt acted as a mother to me, so we’re pretty close. I haven’t written much about the dynamics of my family life yet because, to be completely honest, I was afraid of the backlash I’d receive. Ironically, it would happen without me ever writing about them.

We had a somewhat normal conversation about other family matters, and just as I was wrapping up the phone call, telling her I would talk to her soon, she abruptly cuts me off and asks—

“Did you tell your grandma about a website?”

“No… I told her that I work for a website?” Her tone confused me.

“Well, your uncle Googled you, and you should be ashamed of yourself.”

Time stood still for a minute, or a decade, I’m not sure which.

Whenever someone says that they’ve Googled you, it’s natural to fear that all of your deepest, darkest secrets have been leaked onto the Internet and can be found with a simple search. Has someone blackmailed me? Could they see the poems I wrote in middle school? Is an ex-friend from kindergarten a professional writer and wrote an in-depth dissertation about how awful I am?  After my stomach dropped, though, the fear dissipated because my job is largely on the Internet and I Google myself all the time. Besides a few embarrassing photos from MySpace, there’s nothing too juicy.

What followed is much a blur.

She continued to tell me how she found my personal website, and how disgusting the things I wrote were; that I should be ashamed of myself. She told me how disgusting I am, that I have no class, I’m completely unsophisticated, and deplorable. At this point, she wasn’t just criticizing my writing, but my character as a whole.

After a dozen insults, I only heard white noise. At first I was just utterly confused, but the more she tore me down the more my ears got hot and I was on the defense.

“I don’t know what you’re reading, because there’s nothing disgusting about anything I’ve written. What are you talking about?”

“I don’t want to read about your boyfriend wiping your ass! Do you want people to see this? Would you want your employers to see this? You have no class!”

I’m pretty sure that’s why my website is my full name.

At this point, I was lost, and growing impatient. I defended myself harshly and tried to reason with her. I pointed out that the messages I send are all extremely positive, and that that one post in particular has inspired a lot of people. I told her she completely missed the message if that’s what she got from it. I couldn’t wrap my head around what was so disgusting about mentioning that my partner helps me use the bathroom (a reality in my life) or that I vaguely eluded to the fact that I’m sexually active. She was acting like I wrote an in-depth erotica novel and posted it for the world to see, (which I’ve been considering writing since this all conspired;) all I did was write a PG-rated blog post about dating that literally uses the word “ass” once. I was so incredibly lost, and in many ways still am.

What’s even better is that this all happened in the quiet hallway of a campus center at an engineering university. I was screaming my head off on the phone, while the nerds around me listened and tried not to make it more awkward. After I hung up, the hallway got quiet and I felt my world crashing down. I held it together pretty well until I walked back to where my partner was studying and said, “Can we leave?” I proceeded to go from completely fine to completely bawling in a nanosecond.

It hit me so hard because I knew without a sliver of a doubt how she felt about me.

It hit me hard because it was honest.

It hit me hard because it was a long time coming.

This wasn’t about my writing. My website and the words I wrote were the tool she used to finally tell me how she really felt. She didn’t criticize my writing at all, really. She started with that, but it quickly became about me as a person. Since our family doesn’t often talk about our feelings, I felt a little proud that she actually faced her emotions. What sucks is that most of her feelings about me are ableist.

I had always gotten a bad taste in my mouth about how my aunt, and many others talked to me when I was growing up. I’ve always been well aware of my disability and saw how it made others treat me differently, whether it be at school or in the neighborhood, walking down the street. However, I couldn’t understand why I felt uncomfortable around my own family, who knew me and lead me to believe that my disability wasn’t ever an issue. I never thought it was an issue, but it didn’t change the way they addressed me, and the feelings that came with it were confusing. When I was younger, I didn’t have a word for it, but it gave me a strange feeling in my gut and made me uncomfortable. It was usually patronizing, and often undermined my intelligence or ability, no matter how subtle. There was a lot of, “Oh, you can’t do that!” And, “Really? You can do that [insert mundane thing that has nothing to do with physical strength]?” Most of the time it was paired with a patronizing tone, and there were endless subtle comments that belittled me. For a long time, I pushed it all under the rug. As I grew older, these tones, attitudes, and actions became more frustrating because I could no longer write off the way they treated me as them not taking me seriously because I was young. It was something different.

I never had a word to describe these attitudes and actions, and no one understood why I was uncomfortable. When I got older and started speaking up about my nonplussed feelings, I was instantly met with, “It didn’t mean anything.” Or, “They meant well.”

The truth is, sometimes they did mean well. Sometimes they still do. More often than not, my family does. That doesn’t change the fact that the way they act toward me is ignorant and stems from a bigger concern, and choosing to stay ignorant is a concept I will never be able to wrap my head around—especially when it comes to issues that affect those closest to you.

In the same breath, “meaning well” doesn’t really mean much. If you pull a trigger pointed at someone, even though you wholeheartedly believe they’d be better off dead, the person still dies. My concern is that belief. If you believe someone with a disability is less than you, and you make undermining comments unknowingly, you still view them as someone who is less human than you, no matter how slight it may be. To me, this is the root of all ableism, or any “ism”.

To be viewed as a “less than” human, especially in the eyes of those closest to me, is a hard truth that I don’t think I’ve fully comprehended, or fully understand quite yet. At its core it is a pain that is unbeknown to most, and is a reality that, when fully felt, I wouldn’t wish upon anyone. There are varying degrees, obviously, but I think any ‘ism’ at its extreme is hate, and it’s difficult to hate someone who is on the same level as you—you have to put them below you.

I’m not saying anyone hates me (that I’m aware of.) I know my family doesn’t, and I know most of the people who have treated me wrongly often don’t hate me either. I’m not here to condemn anyone. What I am saying is that viewing anyone as anything but an equal can be problematic, and even these shreds of “isms” can lead to much greater damage. It concerns me how angry my aunt became when I talked about perfectly normal adult activities, and expressed myself publicly in a positive way. It concerns me how angry a lot of former friends became when I finally stood up for myself, however slight. If nothing else, it concerns me how anyone who has been viewed as “less than” has come to see themselves in the world, because I know these issues have caused me more pain than I let on. It concerns me what that pain can do to a person.

So, now what? I don’t know. I don’t have the answers. What I do believe is that empathy is the path to all love. I believe that it’s hard to hate someone, or view them as anything but an equal if you can put yourself on the same level as them. I think we are more alike than we are unlike, and I think focusing on that could do us a lot of good. I think we should be quick to listen, slow to speak, and slow to become angry.

I think I’ll write more.

 

[above] average dating.

Dating me is a strange experience.

As much as I don’t like to talk about it publicly in fear of exploiting my relationship, I can’t deny that the dynamics of dating me are often unique directly because of my disability.

If you know me, you know that writing that sentence sets off red flags in my head and leads me to feel like I need to defend myself. I can sit here and tell you that no one’s special for dating me, that I bring immense value to the relationship too, and that my relationship is fairly mundane and not much different from able bodied couples. I can sit here and fear that someone will take things out of proportion and call my relationship “inspirational” or think my partner is some kind of superhero. These are all facts and feelings that are completely valid, but that doesn’t negate that there are unique aspects to dating someone with a disability.

My life is not average by any means, though we sometimes joke that it is. There’s no other relationship in which as a partner you tend to have to wipe your significant other’s butt, help them cough up mucus with a weird machine, cut up their food into little pieces, assist them in chugging their beer, or have to plug them in at night to a breathing machine.

My boyfriend is no superhero. But, sometimes he is.

(Mostly because he’s dating someone as insane as I am, but more on that later.)

My close friends often tell me, “You’ve really found a good one.” They’re right, and even though I hate that they’re right because I want them to be on my side during every argument and agree with me when I call him a jerk, there’s a lot of truth in these proclamations.

They don’t tell me I’ve found a good one because he helps me use the bathroom sometimes, or because he’s comfortable putting my bipap mask on at night. These are all just things that come with dating me, and to be quite frank, I’ve had assholes who were willing to help with these things too.

However, I did find a good one because there’s an attitude with him that I often have a hard time comprehending. Not only does he help me with tasks that other boyfriends might not have to in other relationships, he doesn’t think twice about it and is constantly asking me how he can improve. He doesn’t even blink when I ask him to help me with something, and all of these little things that might seem weird to outsiders are just a part of our life now. Although this attitude is ideal and should be the norm, it often isn’t.

I once dated a man a boy who would grumble and complain every time he had to pick me up. One time we went to his house, and the only contingency I had with going over there was that he would need to help me use the bathroom since I wouldn’t have access to an assistant. He helped me, but complained the whole time. To which I protested, “How can you have sex with me but have a problem wiping my ass?” I still don’t understand that logic.

My partner now is doing his best to truly understand the differences I have to live with every day.

Not only am I disabled, I’m chronically ill from damaging my lungs a few years ago. He helps me with strange breathing treatments, holds my lungs tight when I forget that they’re still working, and will sit with me in the ER all night—feeding me applesauce and doing his best to calm my nerves, knowing that hospitals don’t feel safe to me.

After multiple nights of sleeping uncomfortably next to him when we first started dating because I was too afraid to wake him up and ask him to help me reposition, we had a conversation to which he replied, “I would rather wake up a few times than you not get good sleep.” Today, beneath all of the snoring, he will not wake up, no matter how hard I try, unless I say the magic phrase: “Hey babe?” — it works every time.

Dates for us often look like running errands. These errands include: trips (to fight the man!) at the company I hire my PCA’s through that always gives me problems, dates to get my wheelchair repaired in which I have to lay on top of him while they work since standard chairs aren’t doable for me, random doctor’s appointments, and other various inconvenient things that I could schedule a PCA to go with me to do, but in which he has no problem doing because he understands how hard finding those hours can be. We’ve learned to make anything romantic, even if it is just sitting together in a smelly waiting room.

Besides the logistics that come with living with a disability, he’s trying to understand the more complex aspects of it too.

We have in depth conversations about ableism. I’ll be completely honest with you, these conversations get messy, and we still haven’t figured it all out yet. We’re trying to merge the lives of a white bread cisgendered straight man and a punk rock crippled chick, while talking about concepts that aren’t black and white or easy to comprehend. There have been times that I’ve damn near shut down completely and refused to believe someone so different from me could possibly understand my worldview. Nevertheless, I’ve never met anyone who was so committed to having these important conversations no matter how messy they get, knowing that the complexities of my life are just as important as the lesser issues are. At the end of the day, I know I can cry to him about why I can’t see myself getting married because of government confinements, or why I don’t feel safe living in a suburb, or how stuck I feel living my life through other people no matter how awesome they are, or why yesterday was just really heavy and the clerk at the store who made an ableist comment was the needle that broke the camel’s back. Any space with him is safe, even if the conversations aren’t always cut and dry.

So, maybe my life isn’t average, and maybe that means no relationship I’m in ever will be either.

However, it has forced me to learn a lot in a short amount of time.

If I want a hug or a kiss, I often have to ask out loud. Communication is ten times more important, and as much as I hate asking for things, the fact that he doesn’t hesitate makes it so much easier. If I want to surprise my partner, it often involves the help of other people, which pushes me to trust others with the more private parts of my life that I often wouldn’t. Despite my partner being so willing to help me, I do have a lot of past trauma relating to my care and it’s been a struggle every day to trust someone with these intimate parts of my life, but that trust is always growing. For me, dating is vulnerability on steroids, but it challenges me to my core and brings us closer together.

Besides all of this, we’re two complex people in general! I’m an often-explosive fiery redheaded creative who is dating a pragmatic original hipster engineer. This has taught me to be patient always and somehow wrap my head around the fact that some math doesn’t have numbers. Our relationship is extremely unique, and we’re both amazing for putting up with each other regardless of any disability, but that’s another story for another time.

I think avoiding the fact that my disability brings up unique challenges has never done me any good. My disability has its fair share of obstacles in intimate relationships, but there’s a lot of good that’s come from it, and besides—chivalry will never die when you literally can’t open doors for yourself.

twenty seventeen.

To say this year has been ridiculous would be an understatement—I have been tripping all year. Nothing makes sense, and I have more stories from this year than I know how to write. It’s been hilarious, appalling, unbelievable, and absolutely beautiful all the same.

There have been a lot of significant moments. I’ve cut ties with those closest to me for my own health. I’ve somehow become a minor celebrity in Milwaukee—uncannily running into someone every day. I’ve traveled near and far. I met a lot of white supremacists. I’ve hired incredible people, and have faced some of the hardest employer-related decisions. I’ve committed acts of stupidity, vandalism, impulsiveness, and came out with a lot of ridiculous stories. I ate a lot of incredible food. I drank a lot of PBR. I took a lot of risks. I quit a job that was killing my soul, and I became a full-time freelance writer. I’m living the fucking dream.

Logistically, a lot has happened, but this year has signified so much more for me.

I don’t have the words to wrap it up in a nice little bow because so much has been unraveled.

I’d spent much of last year healing physically and battling all of the mental repercussions that came with it. I didn’t have a whole lot of time to dig deeper, and I haven’t for years. This year I’ve been able to dig into pain that has been sitting while still dealing with the absolutely insane day-to-day, too.

At the end of it all, I regret nothing.

That being said, I’ve learned some hard lessons.

It has often felt like the worst year of my life.
I’ve grieved, and I’ve loved, and I’ve lost. I have learned a lot from pain. I’ve learned a lot from poetry. I have learned so much from oppression, from injustice, from abuse. I’m learning to say those words and know that they’re true. I’m learning to recognize the gaslights and turn them off. I’ve learned what narcissism looks like, what pure evil looks like, and how to set strict boundaries. I’m learning that my worth does not lie within others actions, that the respect I deserve is not a negotiation. I’ve ripped off, and I am still ripping off all of the bandaids that covered gaping, oozing wounds, and I’m healing. I’m finally learning to heal from the inside out.

I know now that I am in control of my life, despite it being out of control most of the time, and it is damn beautiful.

I’ve still got a lot to learn. I have car alarm heart, but I’m learning to sing along to the tune. I have laughed more earnestly than I have in a lifetime. I have gasped for air harder than I did when I thought my lungs were giving out; I didn’t think it could be harder. In the same breath, I didn’t think it could be better.

I have met some of the most incredible people of my entire existence this year alone, and honestly, they’ve gotten me through some of the hardest parts. They’ve taught me that people can show up, will understand, and can be safe. I now know that despite the awful people I’ve endured, there are good people out there, and I know this because they’re tried and true.

For the first time in my life, I’m breathing easy and I know I’m safe, and that is a groundbreaking statement.

I don’t have the words to express how thankful I am.

Maybe it was the worst year of my life—it’s been a fucking whirlwind. Maybe that pain can’t be undone, but I can’t explain how excited I am for what’s ahead, knowing I have a lot more learning to do, knowing that solid people are right beside me.

no.

No means no means no means no, still means no.

“Not right now,” is not a yes.

“I don’t feel like it,” is not a challenge.

“I’m not sure,” still means no.

“Can we wait?” Is not a promise.

“I don’t know,” is a no.

 

I recently dated someone who told me, “No doesn’t always mean no.” In the same breath, they said, “No can turn into a yes.” At this time, I yelled at them because I’m a confrontational person, but when it came down to it in the end: he was right.

I didn’t always say yes. Sometimes I said ‘not now’, which was protested, and they won. Sometimes I said ‘I don’t think we should’, which was overpowered. I don’t think I ever said no, but I don’t think I was ever in a position where I thought I could.

Consent is a tricky thing nowadays. Well, consent isn’t tricky, but it is often misconstrued. I can’t sit here and say there aren’t women who lie about consent to get a man in trouble; that happens all the time. But, I think there are also a lot of women that don’t know how to say no, especially when manipulation is involved. They aren’t lying when they say they didn’t want to, but didn’t know how to say it. It’s hard to say no when there’s a man on top of you that weighs twice your size, especially if you’re disabled.

As a woman, self-worth plays into almost everything, for me personally. For someone who has the history I do, it’s true that there have been times in the past I’ve thought I had to sleep with people for them to like me. It’s not hard to see; it’s not hard to prey on. Is it right? No. Was it rape? Also, no.

There is a definitely a gray area, and I still don’t know where that line is, or if you can walk it. I’m learning that I don’t want to be around people who make me.

Manipulation has made me make a lot of decisions I’m not okay with. I’m not saying I didn’t consent—I’m not saying this person committed a crime—I’m saying they put me in a position time and time again that ate away at my willpower. I’m saying that anything that isn’t a yes, should be a no in the eyes of any decent person. I’m saying that no woman should have to question if they even can say no.

There are still good people out there. The first time I was with someone after the one aforementioned, they always asked me straightforward, and made me say “yes” before anything would happen—even a hug. It blew my mind, but I’ve slowly realized that this is how it should be.

For disabled women, it’s that much harder. If I’m out of my wheelchair, I can’t move at all. All of my trust is on the other person, whether I like it or not. I have to be more careful than the average woman, and I’ve been lucky in the grand scheme of things. I’ve met some shitty people. I’ve been in relationships that tore away at me, but it was never because of my physical vulnerability. I’ve been lucky.

So, maybe he was right. Maybe a “no” can turn into a “yes,” but anyone who wants to turn your decisions into theirs shouldn’t be making any decisions in your life at all.

No still means no. As hard as it can be—stand firm, friends. We’re worth more respect than we can even imagine, and you deserve to be able to say no.

And so do I, and I do.